Registered nurses’ experiences of challenging situations in their psychosocial working environment in home care of patients with functional and/or intellectual disability: a qualitative study

Abstract

Around 15% of the world's population lives with some form of functional and/or intellectual disability (FID). Nursing staff often face threats and violence in the care of patients with FID. This study aimed to illuminate registered nurses’ experiences of challenging situations in their psychosocial working environment in home care of patients with functional and/or intellectual disabilities. Nine registered nurses/district nurses working in municipal settings were interviewed using a qualitative approach. COREQ was used for explicit and comprehensive reporting of qualitative studies. Three categories were revealed: To face challenging behaviour, To face emotional burden and To face communication difficulties. Nurses need continuous training and support to cope with work-related stress to meet a person with FID in a calm and relaxed mood and to be prepared for critical situations in their psychosocial environment. Training and support may enable nurses to be in a state of harmony and to be present in order to build caring relationships.

Introduction

Functional disability is an impairment of physical, mental and/or intellectual functional ability. ¹ The term ‘intellectual disability’ refers to ‘a significantly reduced ability to understand new or complex information and to learn and apply new skills’, which leads to a diminished ability to cope independently. ² Around 15% of the world's population, over a billion people, are living with some form of functional and/or intellectual disability (FID). Worldwide, there has been a dramatic increase in the number of people with FID. The accessibility of healthcare is limited for patients with FID, and competence and knowledge of healthcare staff are lacking. ³ Patients with FID living in group homes are dependent on support, usually lifelong. ⁴ Patients with FID and who exhibit challenging behaviours, require extensive resources from municipal nurses, and managers need to prioritize resources to prevent and deal with violent behaviour, especially towards staff working alone or on home visits. ⁵

Background

The concept of a psychosocial work environment means the relationship between the social work environment and the individual. The psychosocial work environment includes staffs’ mental health and personal development in the workplace. It controls, through the organization, content and structure of the work, feelings of being connected, self-responsibility, and having influence and control over one’s work situation. ⁶ The employer is obliged to systematically control the work environment to identify risks, ⁷ and this obligation is clarified in Swedish legislation. ⁸ If a conflict of interest arises between prioritizing the staff work environment or satisfying the needs and wishes of patients with FID, it is important to know that the ‘Social services Act’, ⁹ the ‘Act concerning support and service for persons with certain functional impairments’, ¹⁰ and the ‘Work environment Act’, ¹¹ are equal and apply in parallel – none of the laws has precedence. The employer should find solutions that take all parties into account. ¹²

In Sweden, registered nurses and specialist nurses are responsible for health and medical care in the municipalities. Nurses often have responsibility for a geographical area, which presupposes a consultative approach with rapid assessments, prioritization and decisions. ¹³ Nurses in municipality home care often perform home visits in various types of housing. In home healthcare, it is essential to build trust and a helping relation between the client and the nurse. ¹⁴ Research has shown that healthcare professionals who work with patients with FID in municipal housing often face challenging situations in the form of threats and violence and self-harming behaviour.^15–17 Challenging situations can consist of staff being exposed to verbal and non-verbal aggressive behaviour, violent behaviour against staff or others, disruptive behaviour and destruction of property, behaviour that can be difficult to manage.^17,18 In a study among 1984 healthcare professionals, 69.8% reported that they had experienced physical aggression and 94.1% reported verbal abuse over the last 12 months. Aggression was usually experienced in hospitals and housing for patients with disabilities. About one-third of the healthcare professionals reported high levels of stress after these incidents. ¹⁹ Violence may lead to feelings of powerlessness and can cause symptoms of burnout among disability support workers. ²⁰ Nurses who work with patients with FID report an increased incidence of burnout, ²¹ and relationships between exposure to aggressive behaviour and emotional exhaustion have been shown. ²² Nurses who care for patients with intellectual disabilities describe that the experience of challenging behaviour provides lessons about the importance of attitudes, and they advocate the importance of having a holistic view of their work. ²³ Nurses experience a lack of knowledge in recognizing the specific nature and complex needs that may be associated with the patient's functional disabilities;^24–26 as a result, a sense of uncertainty and helplessness is engendered. ²⁷

The few studies which have been found concerning nurses’ psychosocial working environments in the care of people with FID show that nurses sometimes experience challenging situations during home visits to patients. Uncertainty, helplessness and powerlessness are reported; feelings that may increase the risk of developing burnout. This study may contribute to increased knowledge and lead to improvements in the psychosocial environment of nurses who care for patients with FID. Nurses must be able to feel safe in their psychosocial work environment, which needs to be continuously monitored. This study may shed light on measures that may need to be taken.

Aim

To illuminate registered nurses’ experiences of challenging situations in their psychosocial working environment in home care of patients with functional and/or intellectual disabilities.

Methods and design

To gain a deeper and descriptive experience of the aim of the study, a qualitative approach was chosen. ²⁸ A qualitative descriptive design may be used when the researcher wishes to clearly describe a phenomenon. ²⁹ For explicit and comprehensive reporting of qualitative studies, the ‘Consolidated Criteria for Reporting Qualitative Research’ (COREQ) was used. ³⁰

Participants and settings

In Sweden, the municipalities are responsible for healthcare in short-term housing, daily activity and so-called ‘LSS housings’ for patients with FID. The ‘Act concerning support and service for persons with certain functional impairments’ (LSS in Swedish), includes regulations on measures to be taken for special support and special services for persons with extensive and lasting intellectual disabilities as well as patients with lasting physical or mental functional variations. ¹⁰ There are three types of housing for patients with FID: group living, supported living and specially adapted living. ³¹ Registered nurses regularly perform home visits to execute medical care in the various types of housing.

The managers of departments for ‘Disability care – support and service’, in three municipalities in northern Sweden were contacted in September 2020 by telephone and email with information about the study. The managers in turn contacted registered nurses/district nurses (RNs/DNs) who met the inclusion criteria and provided them with an information letter. A district nurse is an example of a specialist nurse. Inclusion criteria for the study were RNs/DNs, active in the care of patients with FID. The participants should have experienced challenging situations in their psychosocial work environments. They could have short or long work experience and should be of various ages. In total, nine RNs/DNs, seven women and two men (six registered nurses and three district nurses) aged 34–54 years, agreed to participate in interviews. Three of the participants had 3–10 years of work experience and the remaining six had 11–18 years of work experience; a median of 16 years.

All RNs/DNs had overall nursing responsibility for a total of 15–55 patients, each living in group accommodation or supported accommodation with staff present 24 hours a day, every day of the year. The RNs/DNs were responsible for drug management, medical interventions and assessments, and coordinated contacts with other care providers. Their work was conducted primarily on a consultative basis. The RNs/DNs made home visits to patients 8–15 hours a week.

Data collection/procedure

An interview guide was formulated to support the semi-structured interviews. The interview guide was developed based on the aim of the study, research in the area and the interviewees’ work background. Examples of interview questions were: ‘If you experienced a psychosocially challenging situation during a home visit, can you please tell me about it?’ ‘Have you ever experienced a situation when the patient was agitated and/or threatening?’ ‘How did you manage the situation?’ ‘If you have experienced insecurity during a home visit, can you please tell me why?’ The individual interviews were conducted during the participants’ working hours at their offices. The interviews were performed by two registered nurses with experience in the area. One of the nurses conducted four of the interviews in person. The other nurse conducted five interviews by telephone as a result of Covid-19. All interviews were recorded via a digital voice recorder. The length of the interviews was on average 40 minutes. The interviews were transcribed verbatim by the interviewers and numbered in order to be de-identified and to be able to be traced to the original text during the analysis.

Analysis

The semi-structured interviews were analysed according to qualitative content analysis. This method has an inductive approach with the aim of searching for patterns, similarities and/or differences in the interview text.^28,32 The interview texts were read and re-read to grasp a sense of the whole. The text was then divided into meaning units that corresponded to the aim of the study. Meaning units were then picked out and condensed; that is, the text was shortened with the core message left. The condensed units were then coded and sorted into groups with similar content, which thereafter formed subcategories and categories. The analysis of the interview text proceeded and developed until consensus was reached about the most trustworthy presentation of the findings. Quotations are used in the results to increase credibility and to illuminate the participants’ stories. ³² The most representative and expressive quotations were used.

Ethical considerations

As the study, from the beginning, was a master’s project, no review from the Swedish Ethical Review Act was needed. However, the current university department reviewed the description of the project and gave ethical approval. The Declaration of Helsinki ³³ and the General Data Protection Regulation ³⁴ were used as ethical bases. The RNs/DNs who agreed to participate were contacted via telephone/email with information about the study, and were informed that participation in the study was voluntary, could be interrupted at any time and that the data would be handled with confidentiality. This information was repeated for the participants before the interviews began. All participants signed informed consent. When the interviews were conducted in person, written consent was obtained directly from RNs/DNs, and in interviews conducted over the telephone consent was obtained by mail. To protect the participants, no information is stated about which municipality the participants worked in and no detailed and sensitive information has been specified. All material was handled with confidentiality by storing the audio material and transcriptions on an external hard drive that was placed in a locked cabinet.

Findings

In the analysis, three categories and seven subcategories were identified (Table 1).

Table 1.

Overview of categories and subcategories.

Categories	Subcategories
To face challenging behaviour	- To be subjected to verbal and physical assault - To always have safety on one's mind
To face emotional burden	- To experience fear and stress - To experience insecurity
To face communication difficulties	- To experience a lack of information in the team - Not being able to understand and interpret challenging behaviour - To experience challenges in communication with relatives

To face challenging behaviour

The findings showed that RNs/DNs described that they faced challenging behaviour in the form of verbal and physical assault. They also described that they therefore often thought about safety.

To be subjected to verbal and physical assault

All the RNs/DNs described that, during home visits to patients with FID, they had sometimes experienced patients reacting with challenging behaviour. They described that verbal threats were most common. The patient may have threatened to harm others or themselves, been agitated, shouted nasty statements, insults and swear words and even threatened to kill someone. Several of the RNs/DNs described that they did not take verbal threats as being personal. They explained that the patient needed support and service for some reason or that the reason could be that the patient was in a psychotic condition.

Several RNs/DNs described threatening situations where the patient had exercised a physical attack on them, such as fencing with his/her arms, throwing things or rushing towards them. One RN narrated an incident where he/she was locked up by a patient in his home. In another incident a patient punched the nurse in the stomach, grabbed the clothing around their neck and knocked them to the floor. Two RNs/DNs described that they sometimes had to call the police for help in threatening unsustainable situations.

… he/she got hold of my login card that I had in a locked strap around my neck, –So he/she grabbed that strap and held on really tight and she also got hold of the job-blouse too, and held a firm grip … (5)

To always have safety on one's mind

The RNs/DNs described that they sometimes experienced threatening situations in patients’ homes and that they encountered patients with challenging behaviour. They prepared themselves for the meeting through a safety mindset. In the absence of safety, assault alarms could be borrowed from the staff. It was difficult to predict challenging situations that arose, those problems could be solved at place. They received help from colleagues and they often went in pairs when they made home visits to patients. However, they described that it is not always possible to bring colleagues. When threatening situations arose they often turned to the staff for advice about how to handle the situation. They emphasized that patients in those cases were met in a low-affective way. In a threatening situation, the RNs/DNs were unpretentious, did not show authority and tried to stay calm and objective. Situations occurred in which the patient did not allow them to perform healthcare interventions. This meant that they chose to back off and return at another time to not jeopardize their own safety. There were situations where patients threatened to injure themselves. In such situations, they chose to stay with the patient to be on the safe side. They described it as challenging when they risked their own safety to provide nursing interventions.

When you give injections, for example, and just when you shall perform the needle stick, it has happened that a fist has been swung to me, but that has … after a while, you learned to fend off when the fist was coming. (6)

To face emotional burden

The findings showed that the RNs/DNs described that they faced emotional burden in form of fear, stress and insecurity.

To experience fear and stress

The RNs/DNs described that in situations with challenging behaviour they experienced fear and stress, but they also described that the feeling of fear came after the event. Challenging behaviour with threatening situations created stress when the patient screamed during, for example, injection or catheter placement. After a threatening event, an adrenaline rush and a need to calm down were evident. Nurses experienced feelings of stress when they met patients who lived in misery despite great efforts and support from society. When there were ambiguities in drug liability and handling of drugs, RNs/DNs expressed stress. Other situations that were described as stressful were when the patients did not have the money to buy medication or did not want to take their prescribed medication and they knew that the patient needed the medication to stay well. Nurses experienced stress when there was a need to contact a physician, though it was time-consuming and difficult as the patients belonged to different care institutions and health centres, which meant that several contacts must be made on behalf of each patient. They also experienced stress over not being able to participate, get a hearing and be taken seriously when they contacted inpatient care to get help with matters concerning a patient.

When a patient screams and throws stuff, I become super stressed, in other words, purely physiologically I get stressed. I get a high pulse and feel how it starts to get hot in the face. (4)

To experience insecurity

One RN/DN described that the first time he/she would make a home visit to a patient with a previously known challenging behaviour, he/she experienced insecurity and anxiety about being abused him/herself. They felt insecure before home visits to patients with FID who had known extroverted behaviour or mental ill-health as they did not know how the meeting would proceed. A feeling of insecurity was also experienced during home visits to patients who had known challenging and abusive behaviour, as it happened that they had guests who could be under the influence of narcotic drugs. In this kind of situation, it was hard to predict how these patients would react to the situation. Knowing that a mentally ill patient could have an outburst of anger at any time, created feelings of insecurity. One RN/DN described that a feeling of insecurity arose in a meeting with a patient in a psychotic state, who came very close and who was larger in size than her/himself. Not knowing the patient or not knowing what would happen during the meeting with the patient, created feelings of insecurity.

There is always an insecurity because he/she can become incredibly aggressive and you do not really know, those who lie on the sofas (guests) and on the floor and what they do. (7)

To face communication difficulties

The findings showed that the RNs/DNs described that they faced communication difficulties in the form of a lack of information in the team and that they sometimes were unable to understand and interpret behaviour. They also described difficulties in communication with relatives.

To experience a lack of information in the team

The RNs/DNs described difficulties with the absence of information about unknown patients with challenging behaviour. A lack of reports on patients between colleagues was described. Due to a lack of knowledge as well as misleading information from colleagues about risks, the RNs/DNs felt unprepared for meetings with some patients. They did not always know what action plans they should take into consideration in the meetings with the patients. Obtaining information about the patient from the medical record was difficult as not everything was documented. They saw a connection between a lack of knowledge about the patient and the occurrence of threatening situations.

Yes, it was the first time I met him, so I did not know that this reaction should come. I was informed that it usually goes well (blood sampling). (8)

Not being able to understand and interpret challenging behaviour

Why a patient refused medication was described as difficult to understand and interpret. The RNs/DNs described that it was difficult to understand when threatening situations arose. All of a sudden, something could happen to the patient mentally that triggered challenging behaviour. Such unexpected situations were described as difficult and shocking when the RNs/DNs usually had a good relationship with the patient. Some situations and patients were described as unpredictable. One RN/DN described it as difficult to predict the reaction of a patient with a disability. Another RN/DN narrated that sometimes when patients did not want to take their medication, it was hard to know how to persuade them. Difficulty in meeting an unprovoked threatening situation was described by a RN/DN as follows:

It was totally unexpected! I did not understand what happened (a punch on the nose), because we had not exchanged opinions or been angry with each other, we hadn't ended up in some situation where we had some discussion or been annoyed at each other or something. (1)

To experience challenges in communication with relatives

The RNs/DNs described it as challenging and difficult to meet relatives who were dissatisfied and sometimes aggressive for any reason. Relatives who questioned their assessments were experienced as difficult to talk to; they did not always reach out to the relatives. The RNs/DNs described that it was difficult to carry out their nursing responsibilities when they were not always invited by relatives to meetings concerning patients over whom they had caring responsibility, therefore they could not become involved in the planning about the patient. It was challenging when relatives did not want to accept the patient's medical needs.

… He/she, with Down's syndrome who had a sister who was very, very caring for his/her brother/sister, and he/she got pretty bad. He/she had a very hard time understanding the fact that he/she may die. (9)

Discussion

The aim of this study was to illuminate nurses’ experiences of challenging situations in their psychosocial working environment in home care of patients with functional and/or intellectual disabilities. In the analysis, three categories were identified: To face challenging behaviour, To face emotional burden and To face communication difficulties.

The findings showed that RNs/DNs encountered challenging behaviour in their work in the form of verbal and physical assault. Challenging behaviour as a common phenomenon is in line with other studies in this area. Healthcare personnel who work with persons with FID report that challenging behaviours are common problems that they often confront and that they struggle to manage.^35–38 The tolerance of challenging behaviours in the findings of the present study is consistent with other studies which show that underreporting of threats and violence are related to a higher level of tolerance and normalization or acceptance of violence as part of the work.^5,39 A study found a connection between being exposed to challenging behaviours and elevated levels of burnout symptoms among staff caring for persons with intellectual disabilities. ⁴⁰ Watson writes that caring is a mutual process wherein the nurses’ ability to take care of themselves is a prerequisite for caring, i.e. the ability to show tenderness, compassion, love, dignity, ⁴¹ respect and reverence to the patient. ⁴² In situations where there was a risk of violence, RNs/DNs in the present study tried to create a relationship by being calm and secure. In a workplace learning programme aiming to reduce challenging behaviour among FID, the staff was supported to take a step back and give the patient with FID space and time to express themselves when they felt pressured. ⁴³ The findings of the present study also show that RNs/DNs always have safety on their minds. They seek support from colleagues and ask for advice when the patient cannot be talked to, and he or she is threatening. Another study confirms that teamwork in decision-making about risk situations is a way to receive support from colleagues working with patients with learning disabilities. ⁴⁴ A reflection is that nurses are in need of support to prevent the normalization of threats and violence, otherwise devastating health outcomes may be engendered. Support should target interventions to calm the patient and to continually discuss and prepare for critical situations. In order to meet the patient in a respectful and humble way, nurses should take care of their own health.

The findings showed that RNs/DNs were facing emotional burden in the form of fear, stress and insecurity in the care of patients with FID. These emotional expressions have also been shown in other studies. Healthcare professionals who are exposed to violence in their work with patients with FID express feelings of fear and stress.^21,23,45 Care staff's lack of knowledge about how to recognize or react to mental health problems in patients with learning disabilities makes them insecure. ²⁷ An insufficient psychosocial work environment, permeated by stress and high demands, can affect staff's feelings and treatment of the patient, which in turn can provoke aggressive behaviour. ⁴⁶ Healthcare personnel who experience job stress are more vulnerable to third-party violence. ⁴⁷ Watson underlines the importance of nurses being able to love, respect and care for themselves and treat themselves with dignity, before being able to respect the patient and treat him or her with dignity. ⁴¹ A reflection is that nurses need continuous training to cope with work-related stress in order to meet a person with FID in a calm, relaxed and respectful mood. Decreased stress levels may prevent aggressive behaviour in patients with FID.

The findings of the study showed that RNs/DNs were facing communication difficulties in the work with patients with FID. Facing psychosocial challenges due to a lack of information in the team was burdensome. These findings are confirmed by Whittle et al. ⁴⁸ who found that lack of collaboration, information about patients’ diagnoses and mental status is perceived by staff as a barrier to overcome. A study shows that it is of great importance that nurses’ knowledge about patients with FID is shared with colleagues. If the exchange of information within the staff group is unsatisfactory, this affects the care of the patient negatively. ²⁴ Lack of information and knowledge about the life history and experiences of patients with FID is perceived to limit the possibility of providing quality care.^16,23,49 If the relationships between nurse and staff at the housing are good, it can lead to information about the patient being transmitted to the nurse, which can lead to increased patient safety, ⁵⁰ and enabling of person-centred nursing. ²³ The findings of the present study show that RNs/DNs experienced difficulties in understanding and interpreting patients’ challenging behaviour and that some situations and patients are described as unpredictable. Appelgren et al. ⁵¹ emphasize that primary nurses experience challenging behaviour among patients with intellectual developmental disorders as unpredictable and dangerous. In order to understand the patient, prerequisites for developing long-term relationships must be enabled. In a study by Tofthagen et al., ⁵² nurses describe that they constantly strive to understand each patient. They cannot always recognize a patient's behaviour, and behaviours can be perceived as unpleasant, provocative and challenging. According to Watson, the nurse should be authentically present in the caring moment with the patient. ⁴¹ A caring moment happens when two persons are in touch and interact with each other; a moment in which human beings are facing the other's otherness and vulnerability. ⁵³ When a nurse is in a state of disharmony, as in our study, a perceived incongruence between the I and me, may be experienced in the nurse. This incongruence may lead to anxiety, fear, despair, illness and may also cause a lack of union with the patient, and the caring moment never takes place. In a caring moment with a nurse in harmony, the nurse and patient are given the opportunity to decide how to be in a caring relationship. ⁴¹ A reflection is about the great importance of promoting functional teamwork, wherein information about patients’ challenging behaviour and how to interpret it is continually shared. This information may contribute to the quality of care, higher patient (as well as nurse) security and an improved psychosocial work environment. Nurses must continually receive organizational support in order to be in harmony and be present in order to build a caring relationship. Persons with FID are often in a vulnerable state and it is therefore of great importance to develop a caring relationship permeated by caring moments.

Methodological considerations

When carrying out this study, we have striven to meet the standards for establishing trustworthiness, that is, dependability, credibility, confirmability and transferability. ⁵⁴ Descriptive content analysis was considered appropriate as a method of analysis of the collected data. When using qualitative content analysis, it may be demanding to keep levels of abstraction and interpretation degrees logical and congruent during the process of analysis. ²⁸ It was therefore crucial, during the analysis process, to monitor the logic in how categories and subcategories were abstracted, interpreted, and related to the aim and to one another.^{cf. 28} In using qualitative content analysis, there is also a risk of breaking down the text into too small meaning units, which may jeopardize the wholeness of the text and the overall meaning. ⁵⁵ It was therefore of vital importance to read the entire text several times to help keep it in mind during the analysis process.

The interviews were expressive, descriptive and rich, which is a strength of the study. The study was performed in three different municipalities, and it is possible that the nurses, for example, used different ways of working and local guidelines. However, these possible differences have not interfered with the analysis process, as the participants narrated similar challenging situations and similar ways of coping. The participants of the study were either registered nurses or district nurses. It is difficult to draw conclusions about whether the length of education was of significance for the findings; it is reasonable to believe that the district nurses were more knowledgeable than the registered nurses. The nurses in our study narrated difficult situations in which they sometimes fell short, and were filled with a sense of inadequacy. These situations may generate troubled conscience in the nurses, preventing them from speaking out. However, they narrated freely about challenging and difficult situations.

Conclusion

Nurses are in need of support to prevent the normalization of the threats and violence they encounter in their psychosocial work environment. Support should target interventions to calm the patient and to continually discuss and prepare for challenging situations. Nurses also need continuous training to cope with challenging situations and work-related stress in order to meet a person with FID in a calm and relaxed mood. Decreasing stress levels may prevent aggressive behaviour in patients with FID and also improve their psychosocial work environment. It is of great importance to promote functional teamwork around patients with FID, wherein information about patients’ challenging behaviour and how to interpret it is continually shared. This information may contribute to the quality of care, the use of person-centred care, higher patient (as well as nurse) security and an improved psychosocial work environment. The support described above should be received continually in order for nurses to be in harmony and to be present in order to build a caring relationship. Patients with FID are often in a vulnerable state and it is therefore of great importance to develop a caring relationship permeated by caring moments.